Coping with Myasthenia Gravis

Laurna Robertson - August 13, 2018 05:49 AM

Following on from my interview: https://www.ecarediary.com/CommentRadioShow.aspx?id=1249, I wanted to share my three recommendations for what will help when you're diagnosed with myasthenia gravis (MG) and the grief that follows. I have also included tips for loved ones during this time and some useful resources.

1. Stop feeling like you’re somehow responsible and stop looking for things you could have done differently?Like many other autoimmune conditions, the reason people get MG remains a mystery. So you can beat yourself up about all the things you have done in your life to bring this condition on, but it’s only going to make you feel worse and there will be no way to know if you’re right.

Until scientists have figured out what causes the immune system of people with MG to go rogue, all your ideas are speculation. And I’d bet they’re pretty negative.

For me, the thoughts went:

• What if I got MG because I did boxing at university? Too many punches to the head could have brought this on!
• What if I partied too hard in my twenties? Too much alcohol could have caused this!?• If I’d lived in the countryside rather than London would it have come on so quickly? All that pollution and stress must have done it!?

All I can say for sure right now is: I have myasthenia gravis because my immune system has gone wild. The rest is purely speculation.

Now for the important question - how am I going to cope with it?

Loved ones: if you can help the person in your life who has MG accept this – that they’re only torturing themselves by trying to find answers and that it’s not their fault – then you’re already helping them live a fuller life.

2. Let someone in

The key thing I would recommend is talking to at least one person about how you’re feeling. This diagnosis is a massive upheaval in your life and because it’s a rare condition it’s unlikely that you’re going to know anyone who is going through, or has gone through, the same thing. Anyway, the condition impacts everyone differently so even if you do know someone, they may have had a totally different experience from you.

So what do you do now that you’re totally alone with this weird-named condition? Find someone that you can trust and speak about how you’re feeling. Whether it’s a loved one, a therapist, a colleague, a grief helpline or a complete stranger from one of the MG communities, try telling them about what’s on your mind and how your MG is impacting you. You might be surprised at how telling someone your thoughts can make you feel less alone. Plus speaking them out loud, will help give you a better understanding of how the condition impacts you and this will be key to learning to live with it.

Loved ones: don’t push them to talk to you as you might be too close for them to share this with. But if you think that they’re shutting down and not talking about how they’re coping, encourage them to speak to someone. Maybe even try to think of people who might be a good option for them. And while you’re at it, find someone who isn’t your loved one to talk about how you’re coping. Because you’re going to need support in this too and you’ll be a better support for them if you’re able to off load.

3. Connect with others who know what you’re going through. So once you’ve accepted that this isn’t your fault and have spoken about how you’re feeling; now might be a good time to try to connect with others who have MG. I found speaking to others with the condition incredibly useful in my early days of post-diagnosis confusion as there are constant questions about what it means and practical day-to-day questions.

Online support groups

Facebook is an easy place to get started if you’re looking for a support community for coping with your MG. If you search Myasthenia Gravis or MG in Facebook, relevant groups for your area should come up.

Some groups that I’m a member of include:
• Myasthenia Gravis unmasked
• Women with myasthenia gravis
• Myaware Young Generation

The benefit of joining an online community is that no matter where you are, you’re able to connect with fellow myasthenics and there’s normally someone who can give a tried and tested answer to your question, no matter how niche it is.

Face-to-face Support organizations

If you would prefer to get support in person, below are the organizations I could find for English speaking countries around the world:?

• America: The Myasthenia Gravis Foundation of America: including a support group calendar.
• Canada: Myasthenia gravis society of Canada including an events calendar
• UK and Ireland: Myaware: The website also has a tool to help you find your nearest support group.
• Australia: Myasthenia Alliance Australia: at the bottom of the homepage you’ll find two support options
• New Zealand: Myasthenia support group NZ. It’s also worth speaking to your medical team as there may be a more suitable, local organization for you.

Loved ones: connecting with other people with MG is a good way for your loved one to help understand their condition because ordinary people are usually much better at explaining how it impacts them than medical professionals are. Encourage them to get involved, but also find out if there is any kind of support option for you too as it can be a great place to meet others who may be going through a similar journey as you are.

If you have any questions, please feel free to contact me via the blog comments or via my contact me page.

The more awareness we can spread about this rare condition the better, so thank you to E Care Diary for having me on as a guest to speak about my condition.

Laurna Robertson has been living with neurological autoimmune condition Myasthenia Gravis for nearly 5 years now. After a year with the condition she decided to try to understand it better by writing a blog everyday for a year. 365 Days of Myasthenia Gravis was born and it covered everything from diet to medication from sex to getting my hair cut.